Thursday, April 29, 2010

Thinking of Writing a Screen Play


This is Don.

He is a brainiac, a very successful science type inventor guy, who is making more money since he retired and decided to just have fun, than he did while he was working. He lives in Malibu.

I met him on the beach in the Bahamas.

I told him I had a daughter with Asperger's and he said, "That's what I have!"

He said he was able to be taught how to conduct himself during job interviews, and can "pass" for brief periods, but not long stretches. 

We talked a bit about writing; he's been writing screen plays for fun, and he suggested I write a screenplay of my daughter Riley's life, the way I would like it to play out. You know, as an alternative to worrying about her.

He said in her moments of great fear(and he's been there), there is not much anyone can do, except "hold her hand through it."

This is her journey to figure out.

It helps so much to talk with those who have an inside understanding of what she is going through.  

Rather than worry, write the story the way you want it to unfold.

I love the idea.


Michelle O'Neil explores family, spirituality, Asperger's, service dogs, law of attraction, homeschooling and other matters on her blog at


Wednesday, April 28, 2010

Update on Hopeful Parents

Hi Everyone,

It's been a long time since I've given you all a status update on Hopeful Parents, and things are looking up!

I'm excited to announce that as of last month, we are now officially a non-profit organization. We have put together a stellar group of parents as our first Board of Directors, and we're in the process of applying for tax-exempt status as a 501(c)4 organization. What's great about turning Hopeful Parents into an organization is that we will be able to start creating revenue, which will help us further our mission of grassroots support for each other and advocacy.

Over the past few months, I've tried to promote connections on our website by adding the Facebook Fan page, the Twitter updates, posts from our Hopeful Parents community, and also spotlighting blog posts that you have posted online.

The community at Hopeful Parents seems like it's starting to take-off with over 300 members. It seems like people are wanting to get in touch with each other at our forums. If you're so inclined, you might want to consider heading over there and responding to some of the introductions. I'll be working more on the community website over the next few months, and in the meantime would love any suggestions you might have about it.

Over the summer, we will be putting together several committees -- marketing, social networking, membership, technology, advocacy, content. If you're interested in contributing to Hopeful Parents as a volunteer in any of these areas, please let me know. I will put your name on "the list," and one of our board members will get back in touch with you this summer.

As always, I welcome any comments and suggestions on how to improve Hopeful Parents. Please don't be shy! And stay tuned for some more positive growth...

:)Christina Shaver

Tuesday, April 27, 2010

Transforming Compassion Fatigue: Key Strategies for Helpers and Caregivers

Family caregivers often have to juggle many competing demands: caring for their child with special needs, meeting the needs of the rest of the family, work, household chores, remembering everyone’s birthday, balancing their budget, doing groceries, medical appointments, the list goes on and on.  As a result, they may stop taking part in their own leisure activities and physical exercise, or in any activity that isn’t “functional.” They can end up feeling drained, discouraged, irritable and even depressed. When caregivers run out of steam, we call it Compassion Fatigue: a form of burnout that affects caregivers and helping professionals who are offering help and support to those in need.

Compassion fatigue can lead to profound shifts in the way caregivers view the world and their loved ones. They may become dispirited and increasingly cynical, they may fight more frequently with their spouse or may lose patience with their kids. It has been shown that, when we are suffering from compassion fatigue, we work harder and harder. What suffers is our health and our relationship with others.

I am a compassion fatigue specialist and mental health counselor. I have spent the bulk of the last decade studying the phenomenon of compassion fatigue and burnout in professionals and family caregivers. I have the privilege of travelling across the country nearly every week, offering educational workshops to helpers of all stripes. During these workshops, I get to meet and talk with hundreds of helpers and many of them speak of the incredible emotional depletion they are feeling. I have done a great deal of writing about compassion fatigue and strategies and solutions that can help. I would like to offer you a few strategies here. If you are interested in hearing more about this topic, please email me: and I will aim to reply to your questions in my next blog post, next month.

Here are five key strategies for staying afloat:

1.Take Stock: What’s on your plate?

To make changes and improvements, you need to know where the problem areas are. Make a list of all the demands on your time and energy (Work, Family, Home, Health, Volunteering, other). Try to make this as detailed as you can. Once you have the list, take a look at it. What stands out? What factors are contributing to making your plate too full? What would you like to change most?  What is most realistically changeable?

2. Find time for yourself every day

Are you currently able to get away for periods of time? Do you have access to respite care?  Even small changes can make a difference in a busy caregiver’s life. Make sure you do one nourishing activity each day. This could be having a 30 minute bath with no one bothering you, going out to a movie, or, if you are doing a lot of the caregiving work alone, it could simply mean taking 10 minutes during a quiet time to sit and relax. Don’t wait until all the dishes are done and the counter is clean to take time off. Take it when you can, and make the most of it.

 3. Delegate -  learn to ask for help

Are there things that you are willing to let go and let others do their own way?  Don’t expect others to read your mind: consider holding a regular family meeting to review the workload and discuss new options. Think of this: If you became ill and were in hospital for the next two weeks, who would look after things on the home front?

4. Get some support

There are times when we all need support and validation. By openly discussing and recognizing compassion fatigue, caregivers can normalise this problem for one another. Consider joining or creating a support group or seek counselling.

5. Look after the Basic Three: Eating, Sleeping, Exercise

-Make sure you are eating nutritious meals that are low in salt, fat and sugar

-Walk 30 minutes three times a week

-Try to get 8 hours of sleep every night or as often as you can

-Lower your caffeine intake

Compassion fatigue is no one’s fault: it is a natural and predictable effect of the work of caring for others in need. It is in fact a sign that much of the work has been well done. It can also be used as a wake up call that improved self-care is necessary. Committing to realistic and reasonable self care goals can, over time, make a world of difference in the life of a helper and in fact benefit the whole family.


Françoise Mathieu is the author of The Compassion Fatigue Workbook. She is a Certified Mental Health Counsellor and Compassion Fatigue Specialist. Françoise offers workshops and consultation to agencies on topics related to compassion fatigue, wellness and self care. For more info:, email:

(A longer version of this article was originally published in the Spring 2007 issue of Solutions: Home Healthcare and Wellness Magazine.)

Monday, April 26, 2010

Fighting for it

I'm supposed to be writing my post for this month.

Instead, I had a nap. A long one. Then I watched some History channel. Now I have the window open but I'd rather be checking my work related forums, or writing in my work related blog.

I am not sure why I do this, but I catch myself doing this as a parent, too. I know that I should encourage Noel to sit on his wiggle cushion when I see him getting out of control. But instead, I go change the laundry over. I need to put him to bed, but I will play a game on my cell phone for 10 more minutes, just to avoid the confrontation.

Confrontation. That is what I'm avoiding. I don't want to fight with Noel, and I don't want to dig deep into my own emotions to face all that has gone on in the last year, all that will continue to go on.

The problem with this method, of course, is that now it's nearly 9 pm. I still need to do my business accounting, burn a DVD for a colleague, and write this post.

And when I don't put him on his wiggle cushion, all that energy spills over and suddenly his sister is crying. And even if I stall for 10 minutes, bedtime is still a big fight.

And when I don't look inwardly at what I'm feeling, then I explode into a mess of anger, frustration, and grief. (Yes, I still feel as though I grieve. I know that's a hot button word in the special needs community, but I own that feeling. It's mine, and you can't have it!)

Confrontation. I feel sometimes like parenting a child with special needs is a constant confrontation. Your child, who needs you to learn new ways of doing things. The experts, who tell you your way of doing things are wrong. The well meaning family and friends who 'just don't see it.' The strangers in the grocery store tut tutting over your child's behaviour. All these things are confrontations brewing on a daily basis. What do we hear most from parents of special needs kids? How they had to fight for their child. For his rights. For his independence. One of the first things we were told was that we'd have a fight on our hands to get funding assistance for treatment. Why is the system set up this way? Why are we making already worn out, struggling families fight against all these outside forces just to get a bit of help? Some parents even have to do battle to get a diagnosis in the first place.

No wonder I don't want to get into a power struggle over turning off the TV at 7 pm.


Stephanie has been procrastinating about writing at Robot Tea for close to three months now. Eek.


Sunday, April 25, 2010

Residential Placement

Maybe if I talk about this enough and write about it enough, residential placement will seem less surreal. My son was having a tough go of it recently, and consequently, so have we as a family. We're again considering the possibility of residential placement for him.

He's on the autism spectrum -- very mild. One of the psychiatrists he's seen said that he'll probably end up being more "quirky" than most people. He's not great in the social department, likes to focus on his topics of conversation (trains, dinosaurs, fish, trains, dinosaurs, fish), and often gets "stuck" on his mad feelings. But whatever. It's not a big deal, as far as being on the spectrum isn't a big deal.

He's also got ADHD and Sensory Processing Disorder (can you be on the autism spectrum and not have SPD?) and anxiety. It's the anxiety that is the culprit here. It's the anxiety that we're having such an awful time managing.

He doesn't do anxiety like most people with severe anxiety do anxiety. He glides past the heart-pounding panic attacks and goes from that very heightened frightened state to psychosis. Clinical psychotic episodes are pretty rare for anyone, let alone a six-year-old. I mean, let's face it, kids are basically psychotic and imagine things all the time. But when I say my son is psychotic, I mean psychotic in the most horrible of ways -- where the imaginary ideas threaten to hurt him.

I think if he were simply hallucinating and delusional without the aggression, we'd be fine. But added to his mix of breaks with reality is fight, as in "fight or flight." When my son gets scared, he does fight, and fight with a physically gifted child has become unsafe in our house. On the dramatic end, I've been kicked down 9 steps on our stairway because "Bowser, Jr. was on the wall and told him to do it." In more everyday circumstances, I am usually sporting some bruise or scratch due to him.

What's hard for us is that while the PDD-NOS spectrum symptoms are present nearly always, anxiety with psychotic features (my diagnosis) isn't always apparent. He could go for days and days and days without an incident. Hell, he went for nearly nine months without one. But when they come back, they come with a vengance, which is when our household becomes unsafe.

So the question is whether to ride out the storms, which can be excruciatingly intense but then can dissipate (in which case things are "fine"), or to place him outside of our home where he can get the help that he needs for those times of trouble.

This has been a question that my husband and I don't see eye-to-eye on. Why should we, though? He's bigger than I am and can take my son's physical aggression more than me. I think he's feeling guilty that he can't always be with us to protect us. But that's just the way life goes, right? I mean if we could be everywhere and everything to everyone, would that make us something more in the category of a god than a human?

We're taking the road to residential placement slowly. I want to get another neuropsych work-up on my son, which takes a while. He's on the wait-list to begin testing sometime in June, which should take some weeks, and then we wait for the write-up, which takes some more weeks. The point is to spend time observing and really assessing our household and family life to try to figure out if this is in the best interest of our son and our family.

I'm not sure how people ever come to accept or determine that it's time for their minor child to live somewhere else, but I guess I'm starting to learn.

Saturday, April 24, 2010

The Lost Baby

"OMG – you have to see the cutest thing the baby does – when she sees that we are about to give her food or her bottle, she opens her mouth before we even bring anything close to her mouth!!!"

That's an e-mail my sister sent me the other day. Her baby is eight months old, and my sis is in awe of her (as you can plainly see). Every single move she makes is literally adorable.

I get a little wistful when I read these e-mails or I hear my sister ooh-ing and ahh-ing. It's because of Max's lost babyhood. I didn't spend a whole lot of time gushing over him or staring at him in fascination. I was too busy looking for signs something was wrong. I was too sucked into a vortex of doctor appointments, therapies and anxiety. I was too distraught to fully appreciate him.

Seeing my sister worship her baby gives me pangs of regret that I didn't savor Max's cuteness as much as I could have. I've said it before: Max was not the least bit cuteness challenged. I look at the photos of him back then, and it hurts me that I was so focused on his future instead of enjoying his chubalicious present. 

I had a healthy baby the second time around, and so I got the experience of mothering a "typical" infant. I full enjoy 7-year-old Max—I see a great kid, not a disabled kid.

Still, whenever I'm around new moms, I get that wistful feeling.  

Thursday, April 22, 2010

The Battle

Yesterday was the end of a 3-month battle to get G into a therapeutic school within the Chicago Public School system.  Initially, right after J’s death,  I had to gather a panel of experts who could come in to my IEP meeting and make sure that G got the appropriate amount of services through the school system.  Chicago in general is known for corruption, but its system continues to come under fire for favoritism in its magnet school selection, top heavy salaries for management, general incompetence and improper teacher training and worse yet, complete chaos in neighborhoods where children are so at risk, the school system is at a loss to cope with the dysfunction presented to them daily.  But I digress.

Our IEP meeting went wonderfully.  Our case manager was on board with our desire to have G sent to a therapeutic school; our panel backed that up by articulating Gs specific needs.  It’s incredible to watch his strengths grow, but it’s also a crucial juncture for G to transition from pre-school into a much larger and more academically focused environment, while still having his social emotional needs met.

The document from the IEP was submitted electronically to the school system at the end of February and no sooner did I receive a placement: to a school miles away, with one of the largest elementary populations in the school system (1260 kids in K-6) and a 90% Hispanic population.  I’m very happy to have G at a smaller, integrated school, but one so large and with many students coming from Spanish speaking homes, I was immediately concerned that his speech delay would be further enhanced and his social emotional needs might be overwhelmed.  His placement was in an autism room – one I didn’t know how well resourced it would be.  The last blended room G had at Chicago Public Schools, there were 25 kids between 3 and 6 years old; very few had English as a first language, requiring special assistance to get them up to speed; 6 had special needs and there were 2 teachers and a para-professional for the entire room.  Many a time, the teachers would approach myself and J to talk about how overwhelmed they were.  I could see the same scenario happening at this new school.

So I got myself ready for a legal battle and engaged counsel.  I started to go through the motions of documenting what would not work with the placement G was assigned.  I was continually fobbed off by the Office of Special Education and their autism coordinator: phone calls weren’t returned, questions remained unanswered.

When I called yesterday to “check-in” again with the autism coordinator, I caught her off guard.  She told me she wasn’t responsible for placement.  But this was a lie that I also caught her in.

After spending more time finding out about who the placement officer was for autism classrooms, I contacted the therapeutic school and spoke with the principal.  She was the one that informed me of the lie – when we got off the phone, the principal called the Office of Special Education and reamed them.  But even that wasn’t enough.

It wasn’t until the principal informed the Office of Special Education that I work within the media that the placement suddenly was changed.

Friends, we did get our therapeutic school placement, but there’s a lot of dirty tricks going on at Chicago Public Schools that everyone should know about.

Between myself and the principal, we deduced since therapeutic education is far more expensive than autism rooms in neighborhood schools, Chicago Public Schools might be trying to stifle enrollment.  And indeed – the principal told me, out of a vast population of children requiring special education in Chicago, only one student had been referred to the school for the coming year.

If there are any parents in Chicago who want further advice on how to negotiate the special education system or to relate their complicated, weary stories, please don’t hesitate to tell me.  As a member of the media, I’m very happy to try and get these stories placed.  As a new widow with a family in crisis, I shouldn’t have to sue a school system to get appropriate education for my child.  I should have access to review instead of being given vague answers and ultimatums. And you should too.

Wednesday, April 21, 2010

My People

Recently, a friend of mine who also has a child with a disability, a horrific one, actually, sent me an email. When I opened it up, I was sitting on a folding chair at the therapy gym, relieved for the hour I could do just that: sit and read emails and then my book, while someone else took care of my daughter, actually worked with her and stimulated her, helped her to move her body and exercise. Anyone who reads my blog knows that my daughter is fifteen years old now, and that she has a severe type of epilepsy of unknown origin. She can walk with assistance but is non-verbal; her seizures have been uncontrolled virtually since the day she was diagnosed at three months, and no anti-epileptic medication has helped her. And I'm tired right now, a bit burnt out if not completely reduced to cinders. I have enough faith that someone or something will spark the tiny ember that contains me at present, but until then I'm smoldering.

But I digress.

I opened the email whose subject line read Here is a poem for you. I proceeded to read the poem which was a sonnet, of sorts, written by a woman as a love letter to her child with special needs. Each line rhymed with the one before it and the gist of this endeavor was God, and blessings and gifts and all things wonderful and nice. It dripped with sentiment and flowers and the bright side of things.

At the end of the poem, my friend had typed Did I just hear you belly laugh?  

 I could almost hear her laugh as I typed back: Do you see the noose around my neck that this poem has driven me to?

People often ask me how I do it, and I generally say that I am sustained by the obvious: family, friends, faith in God for the most part but really more of a faith in the ever-changing universe, meditation and the deep, abiding love I have for my daughter. I also have to admit that a dogged sense of humor and my quite natural, albeit weird, inclination to see the absurd in just about everything, are what has saved me.

Those who share this sense of humor are My People. 

You know who you are, and I thank you. 


Elizabeth blogs regularly at a moon, worn as if it had been a shell. She is a terrible joke-teller but will laugh hard at yours.

Monday, April 19, 2010

Taking the Evening Off

You know how it is. When you have a child with special needs and you dare to venture out in public, you often get stared at, sometimes judged. You know what people are thinking because occasionally they say it out loud. “Somebody needs a spanking!” “Can’t you control your child?” “You shouldn’t have him out in public, disturbing others.” I’ve heard it all. And believe me, it got to a point where I just stayed home, other than the mad dash to the grocery store, when I needed something and there was no one to watch my boys, so I had to take them with me. And why bother with restaurants? My older son’s sensory issues were so extreme that he would writhe on the floor in agony, wailing “go” every few minutes. It was one of the only words he could say at age five.

Time passed, and we dared to venture out a little more. After years of intensive therapy, my son’s sensory issues had become more manageable. But only for a limited time, of course. After ten or fifteen minutes in a restaurant, he needed to crawl under the table for relief. This does not look good at any age, but it’s really frowned upon by age twelve. And although my son had eventually learned to talk, he still didn’t understand the social expectation of thanking the wait staff when they bring you something. I would always model the appropriate response, and at some point, my son started saying “thank you” when prompted. Almost every day, in various situations, I would need to prompt him. After a while, after the thousandth time, I thought it would always be that way.

Then one day not too long ago, at the age of fifteen, my son said his first unprompted thank you when someone had waited on him. I was happy, of course, but I figured it was an isolated incident. I figured that we’d go right back to the prompting routine that had been in place for so many years, that it was a crutch for him. You see, even when my parenting is not being openly criticized by others, I criticize it myself. You know how it is.

Soon after that day, we went to a restaurant. I sat in awe as my sons conversed. There was no wailing, no writhing on the floor. No crawling under the table. No going up to other patrons at their tables and repeating a line from whatever movie had been watched earlier in the day. And when a plate of food was placed in front of my older son, he said Thank you. Completely unprompted. And I allowed myself to entertain the notion that maybe all the years of prompting had not been a crutch. It had been what he needed in order to learn what was socially acceptable, what was expected of him. It just took him a really long time to get it down.

And now, he’s got it down. Last week, we went out to dinner at a restaurant that we’d gone to periodically over the years, once my son had gotten to a point where he no longer wailed and writhed on the floor. In the past, he’d crawled under the table many times, he’d gotten up and walked all around, he’d had to go outside for sensory breaks. He’d never acknowledged the waiters. But this time was different. This time it was like autism took the evening off.  

I know that’s not how it is for my son. Even on the infrequent occasions when things seem effortless, when things flow seamlessly, he is hard at work – processing, filtering, anticipating, regulating. Autism is always with him. But that evening, at dinner, he was flawless. He placed his order like a pro, he conversed, he joked with the waiter, he thanked him - unprompted – three separate times (!), he politely and discreetly asked where the restroom was and returned to the table afterward without wandering. It was nothing short of amazing, and perfect for the occasion - celebrating the publication of my book. For the first time ever in a restaurant, we were able to stay for dessert, and I savored every moment.

But the real treat, the best moment of all, was when the waiter brought us the check at the end. “I just wanted to tell you how well-mannered your sons are,” he said to me. Of course, all parents love to hear that. They smile and say thank you; they’ve probably heard it before. But I never had. Certainly not from a stranger. And my expression probably looked odd to him as I said, “Thank you very much,” while trying not to cry. All those years and years of stares and judgment, writhing and wailing and crawling under tables are finally behind us. Not to mention the years of incessant prompting, wondering why I bothered. Now I have my answer.

And I don’t think that waiter will ever know how much his words meant to me.

                               Tanya writes TeenAutism.

No Sainthood Here

Connor turned four at the beginning of April.  Half the time I can't believe it's already been four years, because it feels like just yesterday I could cradle him in the crook of my arm.  The other half of the time I can't believe it's only been four years.  Seems like the little guy has been part of our family forever.

We've spent that four years figuring out a lot of things about parenting in general and parenting a child with special needs specifically.  Now we're about to embark on a whole new journey, and we'll have new territory to explore.  There's a four year old girl waiting for a family over in Thailand, and we're hoping that family is going to be us.

We're adopting.

It's interesting, the reaction I get when I tell people we're adopting another child with special needs (our future daughter is deaf).  People seem to fall into one of two categories; they think I'm a saint, or they think I'm nuts.  Personally I'd say I fall way, way closer to the latter than to the former, but I'd be more likely to cite my tendency to talk to myself in the car and my obsession with old time radio shows than our adoption plans as an indication of my insanity. 

I certainly don't understand why people associate adoption with sainthood.  I mean, it's not like Jeremy and I are doing it to make the world a better place or something.  We get a KID out of the deal.  This is not an altruistic thing.  It's a similar reaction to what we get when we tell people that our son has special needs, and I don't like it hearing about him any more than I like hearing it about our daughter-to-be.

I think one of the reasons why that reaction grates on my nerves so much is because it implies that kids with special needs are a burden; that they're somehow second best when compared to kids without special needs.  I really, really don't like it when they imply those things right in front of my son.  Not only do I not see Connor as a burden at all, but I think it's a privilege to be able to parent him, just the way I would think it's a privilege to be a parent, period.  Not everybody is cut out for the job, but sainthood is certainly not required. 

We won't be bringing our daughter home for a long while yet, so I have time to think about my responses to these kinds of questions and the inevitable reactions we'll get from parenting a deaf child who is obviously not related to us.  We're pretty used to the staring in the grocery store already, so that's not a problem.  But I want to make sure that I have my ducks in a row by the time she gets here so that if someone implies she's not quite as good as typical (or biological) children or that she's lucky to have us, I'll be able to answer them in a way that lets her know it's the other way around.

We'll be lucky to have her.



Jess blogs over at


Saturday, April 17, 2010


“Mom, after school let’s go to the park and play basketball,” he said while eating breakfast.

“Okay,” I said.

“Mom, after school let’s go to the park and play basketball,” he said while brushing his teeth.

“Okay,” I said.

“Mom, after school let’s go to the park and play basketball, “he said while getting dressed.

“Okay,” I said.

“Mom, after school let’s go to the park and play basketball,” he said while making his bed.”

“Okay,” I said.

After school we came home and I said, “Are you ready to go to the park and play basketball?”

“I need a break first,” he said, going to his computer, turning it on and proceeding to type gibberish madly while talking to himself.

“Okay,” I said.

I busied myself doing laundry, checking e-mail, putting dishes in the dishwasher. Finally, he yelled out, “I am ready to go to the park now!”

“Five more minutes,” I yelled back.

“MOM!” he said, but went back to typing manically so I thought I’d dodged a bullet.

Then the phone rang, and the dog needed to pee, and the clothes that could only be dried for ten minutes were ready to be taken out and hung up, and five minutes turned into fifteen. I feared trouble – flexibility is not his middle name. Going with the flow is not the game around here. Re-adjusting is not something that comes easily.

“Okay, I’m ready now, “ I said. We put on coats, shoes, got the leash for the dog and stepped outside. Pouring rain.  He looked at me uncertainly.

“Looks like we waited too long, now we’re going to have to make another plan. How about we play with the soft basketball in the living room, instead.”

“Okay,” he said.

I’ve waited nearly fourteen years for this day.


Carrie can be found at



not today


It's not as though no one told me that today was the day that I needed to write for Hopeful Parents. I can't call it a surprise that the seventeenth of the month appeared on the calendar's page this morning. It came the same way it does every month - right after the sixteenth. 

But today I just can't do it. I simply can't manage to write some pithy or moving little story or weave together an entertaining vignette from the loose threads of our lives. 

I certainly don't want for material. By God, there's been plenty of entertainment around here - and certainly no shortage of emotion. Three out of the four members of my family melted down in fairly dramatic fashion at some point yesterday. Wait, make that points - plural.

It might even be four of four for all I know - and if it is, I'd like to thank my husband for choosing to lose it privately. These days he knows how desperately I need his calm. We have rules around here, after all - bed time is nine o'clock; one game must be put away before another one comes out; no one goes outside without telling an adult; and only one parent is allowed to lose their sh-t a time. Seems reasonable, no?

So although I could choose from a million half-started stories - I won't. Because I can't. Because quite frankly, I feel like this can be - no this HAS to be - the one place that I don't have to. That I can say, 'I'm tired'. That I can admit that I'm overwhelmed. That you'll get it - really GET it - when I say that even one more thing - one more 'have to' - is just too much today.

One of my half-written posts is about giving ourselves permission to walk away. It's about giving ourselves a break. Knowing when to pull the rip-cord.

It's about how much better I think it is to stop talking than to say things that you can never take back. It's about how we get one chance at parenting our incredible children. It's about how they never forget our words - particularly the ones that we desperately wish they would.

Recently, I got up in the middle of a conversation with my older daughter and walked out of the room. I literally put my hands up and walked away without explanation. I did not trust myself to do anything else. I went into another room and I cried. I raged. I breathed. I got it together and I came back. I told her some of why I had walked away. The whole story was more than a nine year-old needed to hear. I apologized. She shrugged. 

We talked about how important it is to use the tools we have to avoid hurting the people we love with careless or angry words. We talked about the times when we're in a place where we don't feel like we can control ourselves, and that in that place two of the most powerful tools we have are our feet. 

I'll write that whole post sometime. But for today - in THIS place - I'm taking my own advice.

It's too much. So I'm walking away.


jess can be found at





Friday, April 16, 2010

Question and Answer

A year ago I sent off an application for a small grant.  I could not envision the work or even the concrete outcomes with much accuracy then, but the premise was something I felt strongly about and that I believed I could contribute to.

Since that time, myself and my friend and colleague in this grant, Elsa, have travelled to trainings, spent countless hours researching and collaborating, even more hours off on our own working on details, creating relationships, making connections, repeatedly asking for patience from our families while we took these months to focus on this project. This work came to its culmination on Wednesday night with a cross-community conversation/symposium/networking event.

 It was an absolutely exhilarating night, a beginning of so many things.

Through a specific process of progressive conversation that night, we elicited and recorded a list of ideas on how we can make our community more inclusive of those with differences, how we can ensure that these children, youth and adults are not just tolerated, not just acknowledged, certainly not separated through special services, but truly included in all aspects of what already makes our community strong.

This list came from people living and working in more than 5 different districts in my city.  It came from moms, from dads, from grandparents, from school board members, from baristas, from museum staff (public museum, science museum, children's museum), from business owners, from special ed teachers, from regular ed teachers, from school board members, from pediatricians, from lawyers, from behavior analysts, from employers, from service agencies, from real estate agents, from college students, from university staff, from sales and marketing experts, from camp and recreation department directors, from people with differences, from people without differences, from comedians, from bankers, from non-profit founders, from neighbors, from all manner of citizen.

We also asked for and captured a second list:  What I personally will do in the next 6 months to further these ideas.

There was not enough time during our event to hear all of the 6 month commitments people were willing to make.  We have work to do to form these interest/action groups, to gather the resources - some of which were offered that night - to bring these initiatives to life.  Connections are made, people are talking.

Through this forum, Elsa and I essentially asked if we could share the accountability for ensuring our children and others with differences have a place at the table, have the opportunity to develop rich relationships and make meaningful contributions to our community, thus strengthening it for all.

The community answered without hesitation, loud and clear.


Farmer John Cheese and Other Joy


Thursday, April 15, 2010


I took my youngest son in for a Child Find screening the other day. This is the child whom I have long considered the most "typical" of my kids. Unlike the other two, he didn't have a language delay. Unlike my autistic son, he hasn't had any social delays. Unlike my oldest, he's isn't overly anxious and he is also not a weirdly model student.

He's just...typical.

Until this year. This year he started showing signs of obsessiveness. He's become more sensorily rigid. He has trouble with some speech sounds (which is, in itself, kind of typical) and he's become more rigid and resistant to transitions. In autism terms, he's become perseverative and slightly echolalic.

So I took him in to be screened. I showed up completely unprepared and when the psychologist asked me why we were there, I fumbled for words at first. But then I started to remember things. I remembered how he wore a stuffed duck head as a hat for a solid year. I remembered how he refused to wear anything but yellow t-shirts for a couple of years. I remembered all the things that has caused me to call him alternatively adorable and quirky and batshit crazy. In an affectionate way, of course. I think he—and his quirks—are adorable.

He passed all of the screenings individually, but put together, the team decided he needed more extensive evaluations for speech, OT, and educational testing. Cool. I'm all for evaluations. Especially free ones. I told the psychologist that I understood that her brief psych screening didn't indicate that his obsessiveness merited Child Find intervention (i.e., it doesn't affect him academically), but I wondered if her opinion was that I should continue psychological testing privately.

"Does he," I asked, "present similarly to other kids with OCD?" Because that was my initial concern.

"No," she told me. "Not OCD. More like PDD." Which is my autistic son's diagnosis.

You could have knocked me over with a feather because I have never looked at Quinn as a child with autism. Huh. Interesting. On the one hand, I don't see a lot of the behaviors in Quinn that make up autism. But on the other hand, at least I GET autism. I understand it. And honestly, I would much prefer some autistic perseveration than obsessive compulsive disorder.

I've been spending the time since thinking about my youngest and how he might fit on the spectrum. And I've come to the conclusion that, like most of us in my immediate family, he is a little "spectrum-y."

I understand that what this pscyhologist did is not a full workup. I get that maybe he does have OCD. Maybe he does have PDD. Maybe he has nothing and is just a weird, fun little boy. I don't know. But if he were indeed "spectrum-y"—and that could well be an official diagnosis for all I am concerned—it would make sense.

Because I see spectrum-y behaviors and traits in all three of my children, as well as in myself. This new possibility makes him more one of us. I await his full evaluation with interest. But no matter how it turns out, I am happy he is part of a spectrum-y family that will value his quirkiness and make him feel welcome, normal, and part of something.

Jean writes about her life and autism on her personal blog, Stimeyland. She runs an autism events website for Montgomery County, Maryland, at AutMont. She also writes a column called Autism Unexpected for the Washington Times Communities.

Monday, April 12, 2010


We all get angry sometimes, right? I certainly can get furious and I'm sure many of you have plenty of angry moments. It hurts to feel angry and it is often treated as an unacceptable emotion. But, Traditional Chinese Medicine has a different view of anger.

Classical Five Element Chinese Medicine theory says that each of the five elements has a particular emotion related to it. The emotion of the Wood Element is Anger. The Wood element is also the element of Spring, making it appropriate to think about now.

Wood exemplifies the energy of growth, change, and pushing through. It is a very active energy that allows for a lot of movement and progress, both internally and externally. In Spring, we may have more energy to get moving on projects, hence the classic “spring cleaning.” It is a good time of year to work on any blockages. We want to get things moving so we can have access to all that great energy. Spring is a time of action, change and rebirth.

On the other side, when thwarted or constrained, wood is also the energy of frustration, anger and stress. Like the Wood element, anger can make us hard and unbendable - like the tree that snaps in a strong wind instead of swaying

So what can we learn from the Wood element? The key here is flexibility. If we hold ourselves too rigidly, we will break and crumble. If we are too loose and wobbly, like a badly rooted tree, there is no growth and real potential for change. So, the healthy balance is to remain flexible but engaged. Because the Wood element exemplifies the energy of growth, it is also about vision, planning and decision making, essential for creative change. Try to be assertive (not angry), flexible (not rigid), and remain engaged with our eyes on the important people and projects in our life.

In Traditional Chinese Medicine, elements are also associated with body organs. The Wood element represents the liver and the gall bladder. The liver function is considered to be the grand architect for our vision of the future. The liver is the center of strategic planning. President Obama is a great example of the wood element at it's best. The Gall Bladder is thought to be the center of our ability to make decisions and judge wisely. From the functions of the liver and the gall bladder, we can plan and choose – we combine new future possibilities with the wisdom of the past and, as a result, are able to see the clear and appropriate course to take.

Changing course.

This morning I missed an appointment because I was too busy dreaming about teachers in my son's classroom turning into shape-shifters who made me take part in some sort of stage production.

The stress of our son's school situation is invading my sleep time, which already falls pathetically short of what could be considered a normal sleeping schedule. Plus, it's my only ME TIME! 

We uprooted our lives and moved to this city nearly 2 years ago for the amazing children's hospital, but more specifically for their school for the deaf. They have an incredible program for kids with apraxia (hearing kids!) and since our little guy is both deaf and apraxic, this place just seemed too good to be true. Turned out, it was - is. 

He did beautifully there his first year and his teacher noted that after a few months he seemed like a "different kid" - and she meant that in a good way. 

This year the "different kid" status has taken on somewhat negative connotations as he has been treating his classmates like opponents in a WWF wrestling match. There are other problems as well and they all coincide with yet another diagnosis - autism. 

So here we are, unbelievably being told by our deaf school that they can't really successfully educate a deaf kid. I agree. They have no expertise or experience bringing methods that work for autistic children into their classrooms. I applaud their honesty, yet I admit that it feels pretty bad on so many levels to be in this situation. 

As it turns out, our public early childhood school has a program specifically for kids Ethan's age and the focus is on social communication, which is exactly what he needs at this time. We're not sure how we'll get the need for ASL addressed, but I am confident that it will be done as this is one of the most compassionate and professional group of teacher's and administrators I've ever met. 

So he'll transition to a new school that is only 3 minutes from our home and that is staffed with wonderfully caring people who know how to reach kids like Ethan. What at once seemed like really tough news turned into something that I'm very optimistic about. My dreams lately seem to say otherwise, but I think that for the most part I trust that he's in great hands and I feel profoundly grateful for it. 


Sunday, April 11, 2010

Life Doesn't Frighten me

Sylvie’s auntie is visiting us in Vermont this week from Minnesota. I wish she lived closer—not just because Sylvie and her sister adore her, and that I find my sister of one of the more awesome humans in the world—it simply has made a huge difference having her around.  The little family emergencies, dinner and bedtime routines, and daily chores are just a little easier having a third set of dependable adults hands near.  I write that, not to guilt Aunt Carrie into moving out here (she reads these posts!), but because she is one of those people that helps our daily routine be a bit more manageable. 

But having a third party around—even if it’s extended family—also means I have a heightened sense of how we’re handling stress.  And honestly, sometimes our life just frightens me.   

I’ve had one of those weeks from hell that put the faith of even the most faithful to task.  It started with yet another rejection letter from a potential job I was quite excited about and ended with my sweetie almost getting run off the road by a reckless car driver on his afternoon bike ride. My current job situation, that assures my entire family medical insurance, is uncertain past next month.  We had a successful care conference with Sylvie’s many care providers, but the meeting made me horribly late for one of my undergraduate classes I teach.  Our babysitter had a sinus infection, and we need to start looking for more personal care assistants for Sylvie help since our PCA we’ve had since September is leaving next month.  Oh yea, and Sylvie’s seizures seem to be getting longer and more intense.  They leave her stunned a little bit longer after they have subsided.  Moreover, as gorgeous and congenial as she is when she wakes in the morning, between 3-7pm Sylvie’s regular and relentless crying/moaning jags are almost unbearable.  Haven’t I read somewhere that the sound of crying children is being used as a form of prison torture?

In addition, one of the most influential professors and mentors I had in graduate school, Dr. Julie Graham, died earlier this week.  She was one of those activists, teachers, scholars, community members that had a huge influence on the many people she worked with around the world.    And as her obituary stated, she was one of those people who was guided by the belief that the unexamined life was not worth living. She will be missed.  My laundry list of hardship goes on….sometimes my life frightens me.  

I keep telling myself: it’s of no use feeling frightened or depressed or pissed off for very long.  And then I see my glorious sister with my children, and I sigh relief. Or we have a nice Sunday brunch with friends. Or I take a walk to the park with the sun shining so bright that no grim thought is able to endure.  Or I remember how one person, like my former professor, can really influence a large amount of people just through the sheer conviction of people’s hidden values and potential. (Julie handwrote an inscription on one of her books I purchased at a book reading years ago that I was an inspiration to her!  It still feels comical, but I wish more people told each other that!).  These are the little carrot charms that give me energy to move along and forge ahead.

When my daughters were first born, some friends gave us a funky rendition of Maya Angelou’s poem “Life Doesn’t Frighten Me At All” illustrated with paintings by Jean-Michel Basquiat.  Basquiat’s pictures are a little unsettling, and I suppose some wouldn’t think it’s necessarily an appropriate children’s book. But I started reading it a lot when we were in the middle of getting Sylvie’s diagnosis.  Somehow it made me feel better, and it still makes me feel better.  It’s the kind of kick in the pants I sometimes need to keep caring for my family, being present for my sisters and students, and taking care of myself.  So take that!  I’m not afraid of life (or death!):

Shadows on the wall/Noises down the hall

Life doesn’t frighten me at all

Bad dogs barking loud/Big ghosts in a cloud

Life doesn’t frighten me at all

Mean old Mother Goose/Lions on the loose

They don’t frighten me at all

 Dragons breathing flame/On my counterpane

That doesn’t frighten me at all.

 I go boo/Make them shoo

I make fun/Way they run

I won’t cry/So they fly

I just smile/They go wild

Life doesn’t frighten me at all.

Tough guys fight/All alone at night

Life doesn’t frighten me at all.

Panthers in the park/Strangers in the dark

No, they don’t frighten me at all.

That new classroom where

Boys all pull my hair/(Kissy little girlsWith their hair in curls)

They don’t frighten me at all.

 Don’t show me frogs and snakes

And listen for my scream,

If I’m afraid at all/It’s only in my dreams.                              

I’ve got a magic charm

That I keep up my sleeve

I can walk the ocean floor

And never have to breathe.

Life doesn’t frighten me at all

Not at all

Not at all.

Life doesn’t frighten me at all.

Kirsten Isgro is a professor of Communication Studies at the State University of New York and the mother of 4-year old twin girls. 


Saturday, April 10, 2010

Hope and Empowerment

Henry Allen (The Brain Candy Project), me, Michelle Tucker (the Henry Tucker Foundation), Dianne Killian and Heide Randall(both Team Unite) relaxing after the Hope & Empowerment Event

The Hope & Empowerment Event in Indianapolis last month was truly a hopeful and empowering experience for me. I loved meeting and sharing with my “peeps” in the pediatric cancer community. My friend – the organizer, Michelle Tucker – and I were saying to one another that if you didn’t know that you were in the company of a bunch of bereaved parents, you would never know that we were all grieving parents. What a fun, energetic, hilarious, compassionate, intelligent and motivated group of people they are! It was humbling to be a part of the event, and I learned a great deal; I came away inspired to continue working to raise awareness, and support positive change, in the world of pediatric cancer.

One of the highlights, for me, was meeting pediatric oncologist Dr. Bassem Razzouk of Peyton Manning Children’s Hospital. Dr. Razzouk has worked at St. Jude’s Children’s Hospital with the doctors who designed Katie’s treatment protocol. These are the only doctors of whom I know - in the entire country - who are working to cure the rare cancer that Katie had. Though she wasn’t cured, I am deeply grateful that they continue the quest. Dr. Razzouk is the best kind of doctor: compassionate, wise, funny, honest, gentle and brilliant. It was a privilege to serve on a panel discussion with him; I hope to meet him again.

It was also a pleasure to share the weekend with David and Gregg. Seeing Indianapolis for the first time, exploring, enjoying the kind hospitality of the natives, was great fun. And the icing on the cake was the fact that my little piece was published in the April issue of Redbook Magazine that weekend – I bought my first copy at the airport! (It’s the last paragraph on the last page.)

Meeting and being on a panel with Patrick Doughtie (the writer and co-director of the movie, “Letters to God,” which premieres this week) was also inspiring. Patrick and his family are humorous, humble and devoted. The screening of the movie was a powerful experience for our family; it is realistic, funny, sad and inspirational (I give it “two thumbs up”).

Now, we have an exchange student staying with us for 10 days. It’s a wonderful opportunity; David stayed with her family last spring, in their small village in the south of France. Gregg, David and I visited with them last summer while we were traveling, and are very pleased to be able to reciprocate their hospitality by hosting their daughter.

Yesterday after school, I picked up our student and one of her friends, and drove them to a nearby shopping mall. We shopped in many of the clothing stores that appeal to girls of their age, which is 15 years old…the same age that Katie would be, if she were alive.

I enjoyed their enthusiasm and their banter about what they were seeing and buying. I let them have some space, but stayed close enough to help if they needed assistance with currency, sale prices, answering salespeople, etc. I observed their taste and expressions…and felt the absence of my own daughter intensely.

I wished I was with Katie, hearing her ideas, seeing her choose clothes she would like. I wondered how her taste would have changed by now, and wished I could buy some things for her. I wondered if she would be embarrassed by having me accompany her; I wondered how she would interact with the French students.

One thing I feel certain about is the fact that she would have surrendered her room with good grace to our guest.  But to be perfectly honest, it has surprised me to find that having a dark-haired, 15-year old girl staying in my dark-haired, part-French, would-be-15-year old daughter’s room is a little stressful on my emotions. It hadn’t occurred to me that she and Katie were the same age, or that her presence might trigger a grief response in me.

Last night, Gregg had a work function and David was playing in a golf tournament, so I took our guest out to dinner by myself. We enjoyed good conversation and food and had some laughs, but I think I am simply missing the intense, mother-daughter, forged-in-the-fires-of-cancer closeness which Katie and I shared, and which I share with no-one else. It’s another facet of this “new life” that I hadn’t anticipated. I pray that our guest will feel happy and welcome, each moment that she is here. That’s the gift that I would like to give to her, no matter whether I am actively grieving or not.

Thursday, April 8, 2010



The other day after Fudge got in trouble for something he did at school he said.

“ Mama, I wish that it was summer.”

“Why Fudge?”

“ Because I follow the rules better in the summer and it is easier to behave. “

“Oh buddy ,I am sorry that things are so hard at school, tomorrow will be a better day. “

“Mama, I don’t think it will be a better day because behaving is just so hard for me.”

I am a “good catholic mama”, I provide a healthy dose of guilt when my children transgress but with Fudge that is not usually necessary. He has enough guilt for the both of us. His sense of right and wrong is strong but his impulsiveness so often gets in the way of his morality.

It is a struggle to explain to other kids that even though Fudge knew it was wrong he was unable to stop himself. I worry about what other kids are going to think as he gets bigger, as his impulsiveness becomes more and more obvious to the other kids around him. I worry that he will lack the social interactions he craves because of his inability to think before he reacts. I know that he will learn skills and that with time things will get easier but that impulse, that quick reaction will always lie in wait looking for minute when he lets his guard down.



J. writes at Stellar Parenting 101 where she talks about adoption issues, life with her boys and getting out into the garden as soon as she can.

Tuesday, April 6, 2010

Protect Your Health

Everyone is telling us to take responsibility for our own health. We hear it on TV and read it in magazines. Prevention is the message of the day.

Unfortunately, family caregivers as a rule do not always do a good job of taking care of themselves. We are always putting our loved one’s health and well being first. After that there is not much time or energy left for ourselves.

The research is clear! The extreme stress that many family caregivers experience has been shown to affect our immune systems making us more prone to chronic illnesses ourselves. It can cause premature aging and in some cases result in premature death.

  • If you are run down, tiring more than usual, will you be able to provide good care?
  • If you have a cold or the flu, will your loved one catch it from you?
  • If you become depressed will you be able to make good decisions, will life become unbearable?
  • If you are not well, who will fill your shoes, whether temporarily or permanently?

These are not questions to be taken lightly. Your own good health is the best present you can provide to the person you care for.

As caregivers it is important we recognize and not ignore the physical and emotional symptoms which may impact our own health and well being.  We need to guard against caregiver burnout and avoid becoming overly tired and exhausted which can reduce our own body’s ability to ward off illness. 

It is important to remember to create balance between caring for others and caring for ourselves.  But how?  You begin by believing – truly believing – that protecting your health is an absolutely critical thing to do for yourself and your loved one. You may not be able to do this easily, especially if guilt tends to get in your way; but, it is vital that you try.

  • Take a daily vitamin supplement
  • Get exercise — make it a priority for both your mental and physical well-being.
  • Get regular check-ups and do not ignore possible symptoms of ill health.
  • Take a break from caregiving – respite time is crucial.
  • Get a flu shot – more information here
  • Watch for signs of depression – more information here
  • Stay involved in hobbies
  • Laugh with a friend

Sunday, April 4, 2010



(previously unpublished)

John went to the dentist today. We checked in and then we sat down to play in the waiting room. The train tracks were in pieces, so John chose the Duplo table, which was stocked with some other brand of blocks that held together loosely. We played Duplos for a long time, blessed that the dentists were running late.

I went and got a wooden school bus puzzle. It was old, with a varnished wood background. I uncovered a piece with a boy getting on the bus. Beneath it was the same boy, but with a bathing suit and towel on. 

At first John didn't like the puzzle. Right when I was about to return it to the shelf and pick one of the five other less-interesting puzzles, he changed his mind. He started talking about the two wheels. The school bus puzzle that we have at home has two very round, easy wheels. These wheels were not round. The rear wheel was round on top and flat on the bottom. The front wheel was round on the bottom and thrice truncated on top. 

He took a wheel out and couldn't put it back in. I put it in the first few times. "Turn it," I said, but he turned the piece a little and gave up. The next time, holding the front wheel close to its place, I showed him how the round part went on the bottom. I touched his finger to the round half of the wheel. 

I slouched in my kid-sized chair and yawned. He was studying the wheels. The rest of the puzzle didn't exist. He kept trying again, turning the piece, asking for help, repeating. Then, he got the front wheel in.

"John, that was the first time you put that wheel in by yourself."

He looked slightly happy.

The dentist was still running late.

A little more success, a little more asking for help. I got tired of the chair and knelt on the floor where I could see his face. Soon I was telling him it was the third time he put the front wheel in by himself, and then he was on to the back wheel. Same process, different details.

He did it. He figured out how to put both of those difficult wheels in. Visual and motor impairment and all, he saw those glorious black wheels and he went for it, slowly, and with incredible persistence.

He was able to assess what a reasonable goal was. He chose something motivating. He asked for help and he used his words when he was frustrated. And he mastered those two wheels in only 20 minutes. All I did was watch and assist.


Last week John had a fine motor evaluation and scored in the 5th to 7th percentile for his age. It was an improvement from the evaluation six months before, when he scored slightly higher than a carrot.

Do you know how inadequate it is to provide a test and score like that, as the main mode of comment on the movement and purpose of a child's hands?


The fourth time we crossed the country to see John's teacher Bonnie, she allowed him to discover the toy shelf. When I entered her treatment room, I would find that a range of toys appropriate to my child at that very time had magically been put out, while looking instead as though it was put away where it belonged. The toy shelf had just the toys that I didn't know John was ready to discover at the time...the time when he had stabilized crawling and was learning to pull to stand. One of them had four colored, rubberized holes on top, with four correspondingly colored balls. There was a hammer, and if you hit a ball with the hammer, the ball would squeeze through its hole and drop onto a series of ramps, traveling through holes and making wheels spin while you watched it through the transparent front wall of the toy, where it finally popped out through a little doorway. We now call it the hammerball toy. Bonnie--mindfully, I don't know how else to put it--demonstrated the toy. She helped John hold the hammer and pound one of the balls. She seemed to enjoy it as much as if it were her first time to try the toy, too. After hammering and watching the the balls travel through and roll out, there was the task of putting the balls back on top. After a couple of days of watching, I noticed that Bonnie wasn't trying to make him match the colors. She was just naming them. If the blue ball went on the red circle, she said that. Something in me pulled away from that a little, wanting to hurriedly suggest the right spot for each color, but the strength of everything teacher and student did together was enough to quiet it.

A copy of the hammerball toy arrived at our house soon after we got home, from a friend of Bonnie who loved children. Over the next few months I played the toy with John and I stated the colors as he placed the balls on top. "Red in yellow. Blue in blue. Green in red." He loved the toy, he absolutely meditated on it, and I saw him noticing: these colors...there is something going on here. It appeared that he couldn't see the difference between them at first, and given his vision of 20/200 at best, I didn't know how possible distinguishing colors ever would be. He would put his face right up to the toy as he slowly touched the ball to the ring, taking one ball and resting it briefly in one hole, then the next. Unlocking a mystery. 

Soon when I would name the colors, there were some matches. "Blue in blue. Yellow in yellow. Red in gr...oh, red in red." I allowed a little enjoyment into my voice.

And then, I saw humor blossom in John. He would check for my attention, then take the red ball and place it in every ring except the red one. Pausing, he would finally glance sideways at me one more time and then place the ball in its red home. I couldn't take it anymore. I hugged him and joshed him about knowing the colors. How he loved being able to play that trick.

Bonnie showed him. Yeah, she showed him how to hold the hammer, she showed him how to work the toy, but that only took a minute. She showed him that it was his choice. She showed him that all the time in the world could exist in one hour. She showed him the pathways that were already in him, waiting as his birthright; or maybe she showed the pathways that he was there to take them. He was the most satisfied, meaningfully engaged little boy possible in those moments. He was real, and though she had tremendous strength she didn't take his reality away from him, but she touched it and warmed it a bit, so that he could remember later.

She showed him that as long as you are breathing, there is a place for success. He took all that and he kept it, and that's how he could teach himself how to put the wheels in the school bus puzzle today. And that's how his mom could both bear and be thrilled for her son's slow, masterful relation to two flat black wheels in a 20-year-old puzzle.


nervous laughter

   When I was eighteen months old, I was afraid of the lawnmower.  I pronounced it "mum-ower" and, legend has it, would dance in circles around the thing, pointing at it and shouting "MUM-OWER!" while laughing in an exaggerated manner.  So my tendency to laugh at fears I can't fully articulate is nothing new and I wasn't really surprised when my first therapist observed that I use humor as a coping mechanism. 

   A couple of weeks ago, my husband (who I call "Hotter" on my blog, short for "He Of The Ring" after I introduced him here) had a seizure.  He had a stroke after his transplants due to polycythemia, and the scarring in his brain occasionally triggers them; while this was the first time he's had a seizure since we moved in together, we both knew what to do.  I grabbed him a couple of Valium and he laid down on our bed, and I sat next to him touching his fingertips and made bad jokes while we waited: "You are SO INCONSIDERATE," I informed him.  "I am on a deadline and you could at least have done this while there was still enough snow on the ground to roll you outside and let you make angels for the kids!"  Because he was diabetic prior to his transplants, and has had a lot of eye surgeries, the pupils of Hotter's beautiful green eyes are permanently two different sizes.  When it was over, I asked him what I should do: "Should I check to see if your pupils are even--OH WAIT, I CAN'T, DO YOU SEE HOW DIFFICULT YOU MAKE EVERYTHING FOR ME?"  We laughed a lot.

   My kids' therapist recently started working with us all as a family.  The boys are getting comfortable with their stepfather, and vice versa, which means there is plenty to discuss.  Before the first session where he participated, Hotter kept making jokes about things he'd say to the therapist about beatings and establishing dominance, and when we walked into the counselor's office, he just came right out and said "she's worried that I'm going to make us look bad by making inappropriate jokes," and we proceeded to have our first fight ever right then and there on The Couch, and OH MY GOD.  Family therapy is educational, y'all.  You get to see how irritating your own habits can be as your loved ones model them.  Good times!

   Apparently we're both more worried about Hotter's new role as the custodial co-parent and effective male role model of my kids than we realized, and need to stop dancing in circles around that laughing and talk about it. 

   Do you ever laugh at things that aren't really funny?



MFA Mama copes with her daily life through inappropriate humor at her personal blog here.

Saturday, April 3, 2010

They're Here

On the day many Christians celebrate renewal, I thought I'd share a bit of my own personal renewal...

It usually begins this time of year.

They come.

They come without me inviting them to my life.

They come like perfectly timed bombs.

They come to remind me.

They come to be remembered.

They bring the rawest guilt and grief even nearly 8 years since their first visit.

They find a way to unsettle me...unnerve me.

They are not wanted.

They are flashbacks of my pregnancies spiraling down the rabbit hole.

Severe preeclampsia robbed me of a normal pregnancy experience, whatever the hell that is.

It nearly claimed my life twice.

It nearly claimed the lives of my children.

It created two premature babies with lifelong side effects.

It changed my relationships with people.

It caused me post traumatic stress.

It is an evil beast I'd like to slay.

It was not fair.

It was not my fault.

It just happens to 12% of all pregnant women.

It happened to me.

It is unwanted here.

Yet, it reminds me of my precious gifts in Grace Ann and Meghan Rose.

So, I'll let severe preeclampsia and NICU flashbacks stay for a few days, but then they can "hit the bricks" until next year.

I'm ready to celebrate the lives of Grace and Meghan instead.

Friday, April 2, 2010

Keith Richards and My Daughter

“Your daughter,” the anesthesiologist said, “is the Keith Richards of anesthesia.”

I laughed. Keith Richards, guitar player for the Rolling Stones. Keith Richards, who was quoted as saying “I smoke weed all the time and I can’t remember what happened yesterday.”

Keith Richards and my 3 year old daughter…’s not the comparison I’m looking for when it comes to Samantha but I get it.

On this occasion, Samantha had just come out of anesthesia. She was bright eyed, bushy tailed and even gave me a gummy smile. Her stats looked great. It was like she had never been sedated. I was told as soon as the propofol ran through her I.V., she woke up.

Propofol was the last drug given to Michael Jackson. It’s a heavy duty drug.

I shouldn’t be surprised. At six months we were giving her rectal Diastat to stop her seizures. You start a kiddo on such a drug so young, their little bodies become used to it, immune to it effects. Since the choices are give your child Diastat or end up in the E.R on an ever bigger drug, you administer, thank the seizure gods you get to stay home and kiss your little Keith Richards good morning when they wake up from the effects.

I have a bag: a bag of drugs. These drugs are for Samantha and we don’t leave the house without them. I have been caught one too many times without our Ativan; thank you very much. But this bag of drugs goes against every mothering bone in my body. No parent should have to look at the clock to see when the last dose of Valium was given and when she is due for another.

Honestly, I’m a Whole Foods type of girl, give me a kasha knish and a cup of organic chai and I’m happy. I had visions of breast feeding, making my own baby food and only using pure synthetic-free, skin care products on my baby’s delicate bum. This world of prescription drugs, side effects, FDA regulations and watching the dreaded side effects actually happen is very odd and slightly disturbing to me.

But I do it. My daughter needs it. Her brain is not wired the same as mine or yours. I know these crazy, Keith Richards drugs have stopped her from seizing, lowered her erratic heart rate and even granted her a much needed night of sleep.

As a result there are days that I am the enabler. I keep track of when I have given what and if need be, when I can give it again. On most days, this protocol keeps us out the hospital and keeps Samantha seizure free. I try to ignore the comments of you give her how much of what??? And focus on the fact that many of those drugs have kept her here, with us. As Keith Richards would say…. It's great to be here. It's great to be anywhere.